MPIP: Melanoma Patients Information Page

The MPIP is the oldest and largest community of people affected by melanoma hosted through the Melanoma Research Foundation. It is designed to provide support and information to caregivers, patients, family and friends. Once you have been touched by melanoma—either as a patient or as a family member or friend of a patient—you become part of a community. It is not a community anyone joins willingly. But if you must be part of this group, you will find no better place to find the tools you need in your journey with this cancer, and the friends who can make that journey more bearable.

The information on the bulletin board is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

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Jsneathen21's picture
Replies 1
Last reply 1/26/2015 - 10:13pm
Replies by: Anonymous

For some reason I am overwhelmed with my skin graft it is causing me to cry just looking at it... I know it sounds weird but it just does it to me .. I'm not sure of this has happened to anyone else? Or maybe I am the only one who thinks it looks very disfiguring... It's only been two weeks of healing and it just looks so horrible and looks so deep ! and I can't help but cry when I see it! Is it stupid to get counseling for it? Do I need it? Please tell me how you delt with it! Thanks❤️

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kluft's picture
Replies 4
Last reply 1/26/2015 - 9:21pm
Replies by: Anonymous, sharebear

On Friday I wen to my new oncologis for results of my latest PE scan and the results were not at all what we expected. After 4 doses of Anti PD1 drug Keytruda my cancer has spread.. So frustrated. Now recommending I take Arbrane (chemo) to stablize the cancer till a clinical trial opens at SCCA . I felt so blindsided that I forgot to ask about the trial. Has any used Abraxane ?? What were the side effects. 

 

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JustMeInCA's picture
Replies 1
Last reply 1/26/2015 - 8:25pm
Replies by: arthurjedi007

My father had his follow-up PET/CT at UCSF after four doses of Keytruda. While some of his smallest tumors shrunk or disappeared, the larger ones showed growth, in particular a new one on his liver which grew considerably from October to January. 

His doctor, Adil Daud, feels that it's time to try something else. I asked him about the reports of late responders, and he said that while that can happen, his experience after leading trials of the drug for the past couple years is that people who are going to respond usually do by this point. He has suggested the following options:

1. Switch to Nivo, still a PD-1 but a different chemical, which could trigger a different response;

2. Try Temodar, a chemotherapy pill with very mild side effects but a response rate of only 10-12%;

3. Try two more infusions of Keytruda but at 2-week intervals.

Dad has been hospitalized since Thursday, as he started having violent tremors and increasing delirium  after the PET/CT. Luckily, we were at UCSF, so they got him admitted immediately. After many tests and procedures, they believe this was caused by a lung infection, and he has improved considerably after a few days of antibiotics.

I know that no one can really advise me here, but I'm just looking for some thoughts, experiences,feedback on what to consider in choosing the next treatment. I have much faith in Dr. Daud, as he's a nationally known expert on melanoma with much more experience with PD-1 than many, but I was clinging to the hope of that "delayed response". On the other hand, I can see his point of not wanting to waste too much time waiting for a response that more likely than not won't  happen. 

Any thoughts, my friends?

 

 

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About 2008 my dad was diagnosed with Melanoma on his head and forehead. The doctor removed it and on both samples it showed clear margins. fast forward to December 4th 2014 my dad was playing poker which is a pretty routine thing since he retired. A lot of the people know him there and noticed that he was acting strange so they called for an ambulance. Thinking he may of had a stroke they did a CT and later an MRI, they found a total of 18 tumors in his brain. The largest ones are not operable because they are so close to the brain stem. They scanned his chest and abdomen and found a large tumor there 4cm x 5cm. It is likely that he has lymph node involvement also. They did a biopsy of the tumor in the lung and that came back BRAF Negative. Not sure really what that means. He has been on steroids for brain swelling, anti seizure meds, and ativan so he can sleep because those steroids were only allowing him to sleep for 3-4 hours. He has had about 10 whole brain radiations done, now we are going to start on immunology and I beleive Yervoy. Metting with the MD on Wednesday. What questions should I ask? I am a regisitered nurse, but my specialty has never been oncology, so I am lost. I am devestated and not ready to lose my dad, I love him so much. Any help is greatly appreciated!!! 

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Something I just read about that may help those with bone cancer:

http://www.scientificamerican.com/article/designed-molecules-trap-cancer...

Sugar-like molecules self-assemble into a nano fiber web around bone cancer cells but spare healthy ones

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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ecc26's picture
Replies 7
Last reply 1/26/2015 - 7:55am
Replies by: ecc26, Mat, eric w, Bubbles, JoshF

Hello everyone, 

It has been a very long time since I've had a presence on this board. I was hired by our local university in July last year and have been so busy between my treatment schedule and work obligations that I have completely lost touch with this board and the people who are on it.

I am happy to say that I am doing very well. I started PD-1 last June in Boston, which only lasted for 4 doses before the discovery of a 3.5 cm mass in my brain put things on hold. The mass was surgically removed in September and I did well enough pre and post surgery to only delay my next PD-1 by a week. By then FDA approval had come through and I've been able to get my infusions here at my local hospital, which has been very nice. My scans continue to improve, with my last CT in December and my last MRI on Jan 14 (they are not grouped together due to the craniotomy). The hope is that perhaps by this time next year things will have shrunk down enough or been stable long enough to consider a trial period without infusions. I haven't had the best of luck in the past with things lasting (or even working), but I hope that this is the one that does it for me. I had forgotton what it felt like to not live in such constant fear, though I don't trust things quite yet.

I'm really enjoying my job and feeling well enough to do that and get back into a regular exercise routine, etc. I'm aware that some of you are not getting the results you were hoping for and all I can really say is that I'm pulling for you. 

Wishing everyone out there the very best and hoping that you find the thing that really works for you!

-Eva

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BrianP's picture
Replies 5
Last reply 1/26/2015 - 9:58am
Replies by: Anonymous, Julie in SoCal, Bubbles, Mat

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Shelby - MRF's picture
Replies 4
Last reply 1/25/2015 - 12:42am

Dear MPIP Community Members,

Last week, Dr. Keith Flaherty recorded a webinar with us to provide an update on the research and key findings presented at the November 2014 SMR (Society for Melanoma Research) meeting held in Zurich, Switzerland. To access the webinar, please click here. Your name and email address are requested to track the number of visits only.

If you have any questions, comments or topics for future webinars, please contact me directly at education@melanoma.org. Have a great evening!

Sincerely,

Shelby - MRF

About Dr. Keith Flaherty

Dr. Flaherty is director of the Henri and Belinda Termeer Center for Targeted Therapies at the Massachusetts General Cancer Center and Associate Professor of Medicine at Harvard Medical School. Dr. Flaherty’s research and clinical focus is therapies for melanoma, with a particular expertise in targeted therapies.

About the Society for Melanoma Research

  • The SMR is an organization of scientific and medical investigators devoted to alleviating the suffering of people with melanoma
  • It was founded to unify the field by increasing communication among researchers and building bridges of collaboration between basic, translational and clinical investigators
  • The SMR holds annual meetings to provide researchers an opportunity to collaborate, meet and share ideas about all forms of melanoma research

 

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Replies by: arthurjedi007, JustMeInCA, JoshF, Bubbles, Anonymous

Among everything else I'm dealing with they found out the reason my right hip was hurting a lot is because the hip ct yesterday showed a lesion there. He said that was not there on my November petct scan. Since I've been on keytruda since May with a few tumors showing minor growth but no new tumors and other tumors shrinking does this now mean keytruda is failing me so if I get through my current issues I gotta get on a different systemic treatment fast? radiation to hip starts soon to end at same time as rest of radiation.

Artie

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Wader's picture
Replies 2
Last reply 1/26/2015 - 4:18pm
Replies by: joelcairo, Momrn5

I ran across this article that really surprised me. It says one glass of OJ a day is fine but two can be deleterious. But the source was published in 2003. I hope there is later research. Does anyone know about the risk?

 

http://www.healthbulletin.org/vitamins/vitamins16.htm

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RGal's picture
Replies 3
Last reply 1/23/2015 - 3:33pm
Replies by: RGal, Anonymous, MattF

My father's melanoma is now metastasized to his lungs.  Awaiting PD-1 trial which starts in week.  He has been complaining of major aches and pains in his bones.  I am fearful it could have spread to his bones.  Is that even possible?  This waiting for treatment to begin is so hard.  Thanks.

 

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Hello, My name is Mike and I'm reaching out through this forum in an effort to find those individuals with similar diagnosis and test results.   Here is my story, diagnosed with Malignant Melanoma on October 30th 2014 by my dermatologist.   She explained that the mole on my back was malignant and that due to the depth of the cancer cells (5.5mm) and that it was not ulcerous, that I was Stage IIb.   She referred me to a Plastic Surgeon and an Oncolagist with the Cleveland Clinic.  In meeting with the plastic surgeon I was told that the treatment approach was aggressive.  On December 2nd, 2014, I had the radioactive dye and scan, along with the excision of the original mole/tumor site on my back.   They removed the one and only lymph node that showed the dye in it, from my right armpit.   Biopsy report of this lymph node showed that I had cancer cells in the node up to 50%.  The biopsy report on all the meat they took out of my back was also negative. The oncalogist ordered up an MRI (without and with contrast) and a PET/ CT scan. Both came back negative.  Last Thursday (January 15th, 2015) I had all the lymph nodes removed from my right armpit (23 of them).  Yesterday in my surgery follow up appointment, I was informed that all 23 lymph nodes had no cancer traces in them.   I meet with the oncologist on the 26th to discuss treatment options.  

I am a 52 year old male in very good shape.  I am a single parent of a 16 year old and a 19 year old.   I am weighing the scales of decision making as it regards the Interferon Alpha immuno therapy treatment drug.  I have concerns about the side effects during treatment, and the potential side effects that could last the remainder of my life.   My daughter is at home with me and my son is away at college for 8-9 months of the year.  If I were to choose the Interferon, I have a fear that I would put my daughter in a position as care taker for me for the first month - 2 months of treatment.   I have a fear of losing my job if the side effects were so severe that I couldn't work.

I guess what I am looking for is individual(s) who have had very similar diagnosis and test results and what path they took.  I'm not looking for someone to make my decision for me.   I would just love to hear from people that have been through it.   Thanks.   Mike

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Jacqueh27's picture
Replies 3
Last reply 1/26/2015 - 6:21pm
Replies by: tschmith

Still waiting on my daughter to get scans after liver embolization and four rounds of YERVOY. Anybody have embolization and if so, how much did your tumor shrink if all?

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Gene_S's picture
Replies 2
Last reply 1/22/2015 - 9:43am
Replies by: sweetaugust, JustMeInCA
It's Time for Bed. Are You Too Tense to Sleep? IMPORANT
 
 
Debbie Woodbury
 
A five-year breast cancer survivor, Debbie Woodbury writes and speaks about the emotional fallout of living with cancer. Her books, You Can Thrive After Treatment and How to Build an Amazing Life After Treatment share simple secrets to creating inspired healing, wellness and live out loud joy beyond cancer. Debbie blogs at WhereWeGoNow.com and is a Positively Positive contributor, and Huffington Post and Cancer Hope Network blogger. Debbie is a wife, mother, and a former very stressed out attorney.
 
It's Time for Bed. Are You Too Tense to Sleep?
The stress of cancer doesn't leave us at bedtime. Focusing on relaxation, rather than sleep, can get you the healing rest you need.
Monday, January 19, 2015
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
There is a time for many words, and there is also a time for sleep. Homer
 
The worry and stress of living with cancer often leads to insomnia. I often couldn’t fall asleep, or would pass out and be wide awake a few hours later, unable to get back to sleep. I had no idea how badly it was affecting me until my therapist pointed out how fatigued I was during an especially miserable session.
 
As I always tell my children, “When you’re tired, everything’s worse.” In my struggles with insomnia, however, I’ve learned that putting the focus on sleep doesn’t help. In fact, it often makes things worse by creating more anxiety.
 
Instead, I’ve learned I must back up a step and focus on relaxation. If I can relax, I can activate healing responses within myself, one of which is sleep.
 
You can’t go to bed and instantly relax if you’ve been anxious and stressed all day. The following steps will strengthen your relaxation muscle and help you face bedtime ready to sleep:
 
1.     Focus on the breath and meditation. Quieting your mind by following your breath in and out is the most basic form of meditation. All it takes is a quiet place and a few minutes a day. Practicing mindful meditation during the day makes it much easier to quiet the “what-ifs?” at night.

2.     Create quiet time before bedtime. The light from television, computer, tablet and smartphone screens stimulates the brain, which can disturb sleep patterns. Turning off all electronics and reading a book or taking a warm bath alerts the brain it’s time to wind down for sleep.

3.     Journal. Writing down your emotions and concerns on a regular basis can help ease anxiety. If you can’t sleep and are running through concerns in your head, try writing them down. Sometimes, just seeing your concerns down on paper and out of your head can help you get to sleep.

4.     Exercise. There are studies that suggest moderate exercise (such as walking) reduces the incidence of insomnia. (Strenuous or late-in-the day exercise does not have the same effect.)  In my experience, 30 minutes of walking in the morning absolutely helps me sleep better at night.

5.     Set a regular bedtime and time to get up each morning. A regular sleep schedule eases you into a good night’s sleep by alerting your brain to wind down for the night. 

6.     Create a comfortable sleeping environment. A bedroom which is dark, cool and quiet is the best for sound sleep. Remove alarm clocks that put out light, which is another source of unnecessary stimulation.  

7.     Avoid alcohol, caffeine and heavy meals before bedtime. Like caffeine, alcohol is a stimulant. While although alcohol may initially make you sleepy, it will often wake you up in the middle of the night.

8.     Treat yourself to a little TLC. Listen to guided imagery, drink warm herbal tea and curl up in a blanket. Nurturing yourself goes a long way toward relaxing your mind and body and preparing for sleep.

9.     Find support. Without other people who understand, cancer is exponentially harder to endure. Before I found support I was living in my own head without anyone to talk to who understood, which made for many sleepless nights. Support gave me an outlet for my emotions, fears and anxieties. Support helped me release what was keeping me up and helped me get to sleep.  

Maybe it’s just me, but the more I struggled with insomnia, the more worrying I wouldn’t be able to sleep kept me awake. It’s a vicious cycle that got me nowhere. It’s helped me to realize that a good night’s sleep always starts with the healing power of relaxation.

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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aquamak's picture
Replies 3
Last reply 1/25/2015 - 2:57pm
Replies by: Anonymous, ecc26, KMick

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